My name is Richard McBride and I have ALS. I was diagnosed in November 2012 at 57 years of age. This blog will cover my journey. Just remember, I am living with ALS, not dying from it.

Tuesday, 17 May 2016

Nap Time

I'm tired. I don't even know why I am writing this right now. I should be taking a nap. I've been up since the crack of noon. Actually I woke up at around 11:40. A few minutes later Katherine walked in the door and said "get up!" She then announced that she didn't feel like making me breakfast and wanted to go out for lunch. So I struggled through my morning routine, skipped the part where I write my blog post, and went out for lunch, leaving my apartment at 1:00 PM

Going out for lunch entailed a drive to Cochrane, about 30 minutes away. There we stopped at Original Joe's, where I had my first, and second, coffee of the day. After a light lunch consisting of calamari and cheese toast, we headed home. Our wandering path home took us through Big Hill Springs Park, and down an area in north Calgary known as Symons Valley. The whole trip, all in, took about 3 hours, meaning it's 4:00 PM and I feel like I've been at it since before sunrise.

Sometimes I feel like I am fighting a losing war on all fronts; the physical battle, the emotional battle, the exhaustion battle, the psychological battle. I say losing war, not losing battle, on purpose. This war consists of many battles, with only one certain outcome; I will die fighting it. These days the exhaustion part is as tough as the muscle part, as tough as the depression part, as tough as the temporal dysfunction part.

I've gotten used to being tired all the time, used to the overwhelming sense that I am constantly ready for sleep. I've gotten used to the bizarre feeling of body exhaustion while my mind is still awake and alert. But I will never get used to this total warfare of ALS.

Today, while having lunch, I noticed that I adjusted my wheelchair so I could rest my arm while drinking my coffee. The cup felt heavy and my arm felt tired. I needed to provide it with a little extra support. When I drive, and thank goodness I still can, I rest my arms, one on the center console and the other on the door armrest. It's safe. I am still in full control of my truck, and it means my arms last longer, so I can drive farther. But in the end, it gets to me.